Off-Topic Forum

The MPIP Off-Topic Forum is a community bulletin board that provides the melanoma community with a safe space to share experiences and to give and find support from others who can relate to having or caring for someone with a melanoma diagnosis. Please note: if you have an urgent question about melanoma to ask the community, visit the main MPIP Forum.

MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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bioguy's picture
Replies 1
Last reply 2/5/2013 - 10:34am
Replies by: kbc123

Hi All.  I'm new to the site.  I'm a 40 y/o white male with fair skin.  I saw my primary care doc for a lesions on my chest.  It's certainly atypical for melanoma presentation, but it has enlarged over the past 18 months, and started to appear dry and bleed in spots.  It appears like a slightly raised, reddish, mole-like.  I didn't pay it much attention at first, but after my primary care suggested a see a dermatologist for a biopsy, I'm really nervous.  I didn't sleep at all last night, so on top of the anxiety, I'm exhausted. 

Any advice from you guys?  I've always thought that by the time the mole/lesion is bleeding that it's quite advanced and there's not much that can be done.  Any help you all can give would be so greatly appreciated. 


Thanks so much. 

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I'm having mine today. Did you have yours recently? Soon? Don't forget!

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POW's picture
Replies 18
Last reply 2/1/2013 - 8:14pm
Replies by: jag, yoop, POW, BillMFl, Janner, Nancylee

The human psyche is really weird, isn't it? 

My brother in Florida has been a hospice in-patient for almost 2 weeks now. His neurological symptoms have been eased by dexamethazone and he is not in pain. The hospice is a very good one-- the nurses are kind and attentive and my brother is doing pretty well and receiving a lot of visitors.

I returned from Florida to Atlanta 3 weeks ago (just before he entered hospice) and I have been dead in the water ever since. I have been a freelancer for 10 years and suddenly I find myself unable to do any work. I just can't seem to concentrate and I end up taking naps all the time (as a freelancer, I have never allowed myself to take naps!). I don't feel like grocery shopping or cooking so we've been eating a lot of take-out. I just seem to diddle around all day and/or get unreasonably, obsessively angry if some medical person does not return my phone call by the end of the day. At this point, my clients are starting to get restive about my projects. I resolve every morning to sit myself down and do some work -- at least a couple of hours-- but somehow it doesn't happen. 

So I finally went to a caregiver/grief counselor yesterday and asked, "What the heck is wrong with me?! My brother is getting the best care he can get at this time, there are no medical dragons I need to slay any more. Why can't I get my life back on track?" She said I was depressed. Depressed?! Me?! Who'd a thunk?

I suspect that you will say, "Of course you're depressed. Under the circumstances, who wouldn't be?" But I have been depressed once or twice before in my life and it didn't feel this way. Also, I have known intellectually for several months that my brother would probably not survive this illness. I have accepted that fact intellectually. So I shouldn't be depressed about it, right? Wrong.

After talking with the therapist, I now understand that the emotional half of my brain has absolutely NOT accepted what's going on. I need to cry more. I need to paint more. I need to be gentle with myself and stop criticizing myself for my preceived "laziness". But I also need to take little baby steps to try to get my life back on track. Don't try to shop for a week's groceries, just try to get something for dinner tonight. Don't try to make up for lost time on my work projects, but do one little piece of one project each day. Do something physical each day like going for a walk or working in my garden (mild weather is one of the joys of living in Atlanta). Send my brother a funny greeting card a couple of times a week instead of worrying about him all the time.

So I guess my advice to the rest of you caregivers is to not be tricked by the analytical/intellectual part of your brain. ASSUME you are depressed, even if it doesn't seem that way. And think about what steps you can take to be kind to yourself and to deal with your depression. Allow yourself to cry. Allow yourself to rage. And allow yourself to rediscover some pleasures in life. This is a rough road we are walking-- ignoring or denying that fact will just make things worse. 

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Swanee's picture
Replies 1
Last reply 1/31/2013 - 11:46pm
Replies by: Swanee

Today I made the discovery of this BB and from what I gather, it is an informal place to come and say whatever you wish and sharing one's feelings, whatever they may be!   I am going through and reading old posts and trying to get a feel for how everyone was using this BB and the type of topics they would talk about.  Apparently, most users have dropped off and it is not being utilized quite like it use to!  I discovered a post from dian in spokane from last year at this time and she was wishing Charlie a happy birthday.   I love Charlie's posts and his to the point answers, he always makes sense to me and has helped me out of my own confusion many times, since being diagnosed 3 years ago with stage IV.   I see from other posters, he is well loved, respected and is a bit of a icon on mpip!

I think my husband shares the same birthday and I would just like to know if that is I can additionally raise a glass to Charlie too!

Cheers Charlie!


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POW's picture
Replies 11
Last reply 1/31/2013 - 12:12pm
Replies by: POW, Colleen66, sjl, jcmp, BillMFl, Phil S


Last week my brother was taken to the ER with severe speech aphasia, mental confusion, and an inability to walk. His brain tumors were back big time and there was nothing more the doctors could do. So they put him on dexamethazone to relieve the brain swelling and sent him to hospice. We were told to expect 1-2 weeks. However.... the dex has relieved his symptoms considerably. He is awake and alert and keeps wanting to get out of bed alone (his walking is still very unstable so that is a fall hazard). He can talk again and walk (with assistance). He is eating well, and is happy to receive visitors in his hospice room. Amazing!! He is an incredible fighter!!

He is now considered too healthy for hospice and they want to move him out, which puts the family in a bind. He wants to go home, of course, but he still needs continuous nursing care and our family can't afford a 24/7 private duty nurse. We are now trying to find a local nursing home, but so far there are no open beds. And while the dex has relieved his symptoms, he is not getting any cancer treatments so this reprieve is temporary. How long will it be before he has to go back to hospice? A few weeks? A few months? Nobody knows.

Two weeks ago my brother and our whole family were excited and optimistic because he finally started ipi treatments. Maybe--just maybe-- ipi would work for him. Last week we were in despair because he collapsed and his prognosis was dire. Now we're happy that he is so  much better, but also feeling guilty because he badly wants to go home but we can't afford the skilled nursing care he needs. On the other hand, hospice is not a good place for him medically because the complexity of his case is outside of their experience. They specialize in pain management and emotional support; they are not used to handling patients as active as my brother and don't know how to titrate his dexamethazone, for example. So this causes the family concern, too. 

When all this started 6 months ago, I expected a long, slow decline that would eventually end in a quiet and hopefully peaceful passing. I never expected all of these physical and emotional ups and downs. I never anticipated that my brother would not ask anyone for help (like asking his friends for a ride when he couldn't drive) or that he would refuse any outside help that was offered (like at-home hospice offering him a home health aide). That left the ball squarely in my court, which I didn't expect. I didn't appreciate the constant emotional tightrope we have to walk between maintaining a positive mental attitude to encourage his recovery while simultaneously being realistic about his prognosis.  Every time he suffers another medical crisis, I have to ask myself, "Do I take another medical leave from work so I can be there "at the end", or do I hang tough and see if he bounces back once again?" That is an awful dilemma to have to face time and again. 

I suspect that everybody who is dealing with any type of terminal cancer, especially melanoma, goes through these same things. I just wish I had been better prepared for the mental, emotional, and financial upheavals we're going through. Unfortunately, most of the people on the MPIP forum don't want to hear any bad news. They want upbeat, optimistic reports, for which I don't blame them. They also are not all that interested in the caregivers' perspective-- if you aren't walking the walk don't talk the talk. And I understand that, too. And I know that no matter how confused and exhausted I feel, my brother has it much worse. But, oh, what a difficult road this is to travel for those of us who love and care for the patients!!

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BillMFl's picture
Replies 3
Last reply 1/30/2013 - 6:33pm
Replies by: BillMFl, Swanee, jag

This Off Topic BB used to be very very active. It was a combination of patients, caregivers and family members. And it was an anything goes outlet for all of us. We fought, we laughed and often became very close.  It linked people from all over the US and other countries as well.  It became a great place to blow off steam, laugh, curse or cry.  It also got abused by some and that eventually drove away a lot of people.  Perhaps some of you should grasp the opportunity and use this almost empty board to vent and share about things you don't feel comfortable talking about on the main board.  Its here for the taking. Make it yours!

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I had Melanoma Stage 0 in 2012 so am now at higher risk for melanoma I am told. I also have very, very fair skin, blue eyes, etc... My father had all types of skin cancers and was treated and cured. I also have breast cancer stage 1 and there is a strong link between the two so i want to be monitored by a good doctor in the NYC area so i can hopefully catch any other melanomas at stage 0.

I am not sure which hospitals are best at monitoring for melanoma high risk patients in the NYC area. I tried getting in to sloan to see a top doc there for monitoring but apparently i do not qualify becuase i only have stage 0. i don't quite understand this because i would think it is important to catch it early, but i don't seem to be able to find doctors who specialize in melanoma who are willing to monitor stage 0 patients. The dermatologist i am seeing does not seem to be the best and does not really specialize in melanoma. In fact, he indicated that the melanoma stage 0 was nothing on several exams until i requested that it be removed and tested.

So far, i have an appointment at molesafe at NYU which i heard is the only one in the nation, but i was wondering if anyone can recommend a doctor/hospital that is considered good for melanoma monitoring high risk patients in the ny area. Thank you. 

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Muru's picture
Replies 1
Last reply 1/26/2013 - 2:18am
Replies by: Janner

Hi All,

I had melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed. I was under constant observation. Now this has recurred again in my larynx area.

Again doctors are advising the major surgery for this recurrence. They are suggesting that my entire voice box has to be removed. I may undergo a surgery in  a week.

Whether anybody has faced similar Cancer recurrence in this area? If So, what

1. What will be the impact of the surgery in this area.
2. Will I get  my voice .
3. Do we have any other better treatment to make sure that this will never recur again
4. Which is the best hospital in the world to treat Melanoma
5. How can we ensure that this will will never recur again.

I am waiting for the guidanace from you friends.




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KyCyn's picture
Replies 12
Last reply 1/23/2013 - 8:30pm

I haven't visited for a while, but I was so glad to see so many names!  Glad to know all y'all are still kicking :)


Happy New Year!  


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Liz C's picture
Replies 5
Last reply 1/16/2013 - 12:36am
Replies by: Anonymous, JC, Cooper, Janner

I'm pretty sure there's a Forum for Stage 1 patients, but I don't know where it is. Can someone point me to it?



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MeNDave's picture
Replies 7
Last reply 1/11/2013 - 11:57pm

I've never used the off topic forum before - it seems to me looking back that everytime I was on this dang computer I was looking up treatments or clinical trials.  I just wanted to say hello to everybody - I do not recognize many of the people on the BB now, and with losing Dave I am afraid to post.  I mean really, who wants to hear treatment advice from somebody who lost their spouse to the disease?

It's been four months now since he's been gone, and we are picking up the pieces.  The kids and I are adjusting to our new normal and just started  group therapy sponsored by the Gilda's Club (in memory of Gilda Radner).  It seems to help.  Looking back over the last 4 years, it is amazing how much I have changed - and continue to do so.  I am starting school in the spring - something that Dave always told me to do.  Whenever a doc would ask me "do you work in the medical field?" he would answer "no, but she's going back to school!".

This board was such a life line to me during Dave's journey, and I thank God that I found it.  I have found a really good on line young widows group that has helped me tremendously, both with my journey through grief and my kid's.

At any rate, I think of you all often - the people I met through this board will forever hold a place in my heart.

Live, laugh, love - really, it's what life is all about :)


Don't ever, EVER, give up!

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Nancylee's picture
Replies 9
Last reply 1/3/2013 - 8:45pm
Replies by: Nancylee, KyCyn, BillMFl, Anonymous

A long time ago, possibly in 2005, i wrote kind of my story with my DX from a local lab and mayo clinic. It was always on site, so if i wanted to search information i could read their story. I am actually looking for information from mine. Does anyone know where it is or how i can find it.


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I am getting close to my 2 yr NED mark, I am also helping my 15 year old daughter who has cystic fibrosis put together a dinner/ live auction for the CFF . This is our 12th year and it continues to grow each year. However, we are a small community and many have not only helped my daughter thru her battles, but also helped so much in my melanoma battle and year of interferon.
What we decided was to try to get several items related to melanoma together so that we could make a melanoma basket or have several melanoma items that we could auction of as well, I know it would help raise money while putting that awareness out there as well. We need tshirts, craft items, books, jewelry, stuffed animals or anything that raise money in a live auction! The event us called Megan's wish , in honor of her wish to live long enough for her daddy to walk her down the aisle one day, ( and darn u melanoma, I want to be here to see it too!) the event has a Facebook page or I can answer questions. Please send any items to : Megan's wish, 5989 N County Road 1075 east, Seymour, Indiana 47274.
Thanks for listening, please help spread the word!!!!

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I had surgery on my outer quad/thigh to remove a melanoma in situ about 6 months ago. I'm finally starting to regain feeling on the surface of my skin surrounding the incision site, but now I have a new problem: more widespread numbness.

Whenever I have something (like a laptop) resting on my lap, it's painful all down my leg. Also if I sleep on my side, either one oddly enough, the same pain occurs. I'd call it numbness because that's what I'd assume the pressure would be creating... but I guess it's more of a pain. It is almost like the feeling that happens right before a pins and needles sensation.

The real question here is this: Will this go away? Is it cause for concern? I know it's not uncommon for nerves to be cut in this type of surgery, but I don't know much about nerve regeneration symptoms. Really any info will be a help! Thanks!

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